#inclusionbodymyositis
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livinglifeinflipflops · 4 years ago
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Started Hizentra today! This one I can do myself! . . . #scig #hizentra #subq #igg #chronicillness #6needlesticks #freedompump #lupus #inclusionbodymyositis https://www.instagram.com/p/CI6mBCoJHZj/?igshid=1krm4mvskorzd
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myositis · 7 years ago
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List your Myositis Doctors
In an effort to create a better listing of physicians who diagnose and treat #myositis, we are asking you to use our web form to enter as many details as possible about the physician's you see for your myositis. This will be helpful for patients looking for a new doctor and for new patients looking for their first.
There is also a rating when you list the doctor. Please rate them seriously according to how you feel they understand and treat you and myositis.
We appreicate your support in this endeavor. 
https://UnderstandingMyositis.org/list-doctors
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myositis · 7 years ago
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Myositis Support and Understanding Association Supports Rare Disease Day® and Joins Global Movement to Raise Important Awareness for Rare Diseases
Lincoln, DE—February 20, 2018—Myositis Support and Understanding Association (MSU) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.
As part of the MSU patient-centered focus and commitment to educating and supporting those with myositis, a rare disease, MSU is hosting two live online video education sessions on Rare Disease Day, February 28, 2018, as well as a month-long celebration with patient support and activity sessions. The focus for MSU is the idiopathic inflammatory myopathies, which includes dermatomyositis, polymyositis, juvenile dermato- and poly- myositis, inclusion body myositis, and necrotizing autoimmune myopathy.
Dr. Victoria Werth, MD, will join MSU for a live, online video education session titled “Overview and new developments in dermatomyositis” at 2PM EST on Rare Disease Day. Register here.
Also, Nurse Vicky Starr, RN, IgCN, will join MSU for a live, online video education session at 6PM EST on Rare Disease Day, titled “IV and SubQ IG Therapy for Myositis.” Register here.
  See ful release
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livinglifeinflipflops · 5 years ago
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Round 45!
New blog post: Round 45!
Round 45 was the week of August 5th. It was 4 weeks from the last round of infusions, as they wanted to give me a registry nurse, and again, I said no. I guess they keep losing regular nurses, plus they let too many people go on vacation at the same time. All the while, the patients suffer.
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Anyway, my nurse, Debra was back. She was out for awhile taking care of her daughter who had surgery, then…
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livinglifeinflipflops · 5 years ago
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Round 44!
New blog post: Round 44!
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I know, I know, I’m so far behind on these blog post. Life and other shit has gotten in the way, especially migraines! Round 44 was the week of July 8th. It was 4 weeks after the last round, instead of 3 weeks, because there was a mix up of nurses , and they wanted to give me a registry nurse again. I don’t understand why I’m the one getting stuck with the registry nurses, but that’s a whole…
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livinglifeinflipflops · 5 years ago
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Just not feeling this infusion today! . . . #ivig #lupus #inclusionbodymyositis #homehealthcare #infusions #portacath #chronicillness https://www.instagram.com/p/B01GBoogWRP/?igshid=1m3jbhmbj5vj5
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livinglifeinflipflops · 6 years ago
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#IVIG week! . . . #lupus #inclusionbodymyositis #homehealthcare #portacath #chronicillness https://www.instagram.com/p/B0yq6p6gRdE/?igshid=ja19mpqwrryv
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livinglifeinflipflops · 6 years ago
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My baby always by my side during infusions. . . . #round44day2 #ivig #emotionalsupportdog #lupus #inclusionbodymyositis #infusions #homehealthcare #portacath https://www.instagram.com/p/BztPHJMgzm4/?igshid=g6njfq76g3ih
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livinglifeinflipflops · 6 years ago
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Show your support! #rarediseaseday #inclusionbodymyositis https://www.instagram.com/capturedbytammy/p/BucMFNFnrml/?utm_source=ig_tumblr_share&igshid=erw13subzsrk
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myositis · 8 years ago
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Mental Health & Myositis Awareness Month’s meet, Jerry shares his story
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myositis · 8 years ago
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With #myositis, chances are we may need social security disability. Check out this link to learn more about SSDI.
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myositis · 8 years ago
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Rare Disease Day 2017 was held on February 28th. It is always held the last day of February. This year, Rosemary McNamara attended Rare Disease Week on Capitol Hill and she took a lot of notes and recently did a video information session with MSU and fellow patients and care partners.
This blog piece serves as an addition to her video to provide you with short pieces of information and links to the sites she mentions during the video.
Please note that some of the following information is directly from RDLA’a flyer.
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livinglifeinflipflops · 7 years ago
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Round 22 Day 2!
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Today went okay. Still no blood return, but I’m still flushing and flowing good. My nurse isn’t too concerned about it right now, but we do have some Cath Flow on hand in case we need it.
My IV hydration really helped today. The side effects were at a bare minimum. I’m getting 500ml of hydration right now, starting next round, my doctor upped my hydration to 1L. I requested it, since it really…
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livinglifeinflipflops · 6 years ago
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Round 43!
New blog post: Round 43!
Oh my, this post is so late! Round 43 was the week of June 10th. This round, I had to do my infusion at 4 weeks, instead 3 weeks due to no nurse available, unless I wanted a registry nurse (a hard no). I had a new nurse that I’ve never had, Nicki, because Elizabeth is out of town, as her daughter is having a baby. I’m only going to have Elizabeth 1 more time anyway, as she’s moving out of state.…
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livinglifeinflipflops · 6 years ago
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Round 40!
New blog post: Round 40!
Round 40 was the first week of April. The only problem we had, besides the usual side effects, was that we didn’t get any blood return from my port when we accessed it. It flowed good, and the medicine went in fine, so my nurse isn’t worried about it. We tried each of the 4 days to get some blood return, but we never did get any.
During the week, I got a couple of migraines, associated with the…
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livinglifeinflipflops · 6 years ago
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Round 39!
New blog post: Round 39!
Round 39 was the week of March 11th. Debra was my nurse. Looks like she’s going to be my nurse from now on. I guess Elizabeth isn’t coming back.
I didn’t really have any problems this round, just the usual side effects. I already wasn’t feeling well before this round started, so I felt really blah and completely out of it the whole week. I slept the whole time every day.
The week seemed to go by…
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